Already have an account in the Map-HD Registry? Click here.
The HDNA aims to facilitate the best quality of life for every person in Australia affected by HD. The Mapping Working Group, formed in June 2020, has broad representation from across Australia. The group includes representatives from the HD state associations, the HD specialist clinics, and from those who are directly affected by HD. The aim of the Mapping Working Group is to guide and advise the HDNA Project Team in mapping HD across Australia. The Map-HD Registry is the first Australia-wide registry. The registry will show us which regions of the country need clinical care and support services for Huntington’s disease.
Why Map-HD in Australia?
We believe an Australian HD map will provide the essential foundation for:
- Recognising the needs and preferences of the HD community to ensure these needs are reflected in our clinical, social and financial supports.
- Building a network of skilled clinicians who are able to deliver treatments as they become available.
- Characterising the incidence and prevalence of people affected by HD across Australia. This will help inform the economic impact of HD on the healthcare system and the indirect impacts on employment.
One of the best ways to Map HD across Australia is to encourage as many people as possible to join the Map-HD Registry. If you would like to get involved, it’s easy!
Considering signing up to the Map-HD Registry?
Here is all the information you need to help you decide whether the Map-HD Registry is for you:
Please take the time to read the Participant Information and Consent Forms below. Different forms are available depending on who is to be registered in the Map-HD Registry and who will be providing consent. Please note that these documents are for review purposes only. Consent will need to be provided within the Map-HD Registry.
- For an Adult providing own consent, please read PICF Adult Self Consent
- For a Carer/Partner/Responsible Person consenting on behalf of someone they care for, please read PICF Carer / Partner / Responsible Person
If the person to be registered can understand what it means to be in the registry and is able to weigh information about being in the registry in making their decision to participate, use the form labelled PICF Adult Self Consent instead of this form. If they do not understand all of what it means to be in the registry or cannot use the information provided to make their own decision, use this form to consent on their behalf.
Are you from Western Australia? If so, WA specific laws apply. Please contact us before proceeding (03) 9902 0081 or firstname.lastname@example.org
- For a Parent/Legal Guardian consenting on behalf of a child, please read PICF Parent / Legal Guardian
After reading the above and deciding to sign up to the Map-HD Registry, you will be presented with the Participant Information and Consent Forms within your Map-HD Registry account. Choose the relevant form within the Map-HD Registry and provide your consent in order to complete your profile.
Follow the link below to sign up. Please note that you will need to have your mobile phone handy.
What information is needed to complete your profile in the Map-HD Registry?
In preparation for completing your profile in the Map-HD Registry, here is a list of what you need:
- An Australian mobile phone number to enter during the account creation process. You will need to have the phone with you to receive a verification code.
- A username (this may be your email address or any other username of your choice)
- A password of your choice
- If applicable, the names of HD specialist clinicians you have visited in the last two years (approximately)
- If applicable, your NDIS plan. You may provide details about the services which have been approved, the extra time you need for services, how long it took to receive the plan, how long it took before you started receiving the services in the plan and your overall satisfaction with the plan
- If applicable, the Australian government-funded aged care services you receive (ongoing and short-term), how long it took for the services to be approved and whether the Regional Assessment Services (RAS) or Aged Care Assessment Team (ACAT) conducted the assessment